Friday, February 17, 2012

There were several highlights in our stay at Shriners. Some of the them included developing friendships with the other patients and their families. One family came in about halfway through our stay. Their 7 year old son, David, needed traction to try and correct scoliosis due to a bone disease. Daniel was able to befriend David during this time, and sympathize with him like no one else could. They would often hang out, play board games and video games together. And Wes and I related our experiences and offered our advice to David's mom and dad. Alex was another special patient to us. Complications had arisen from a major surgery to his spine, and he developed an infection and a spinal fluid leak. He was required to lie in bed for days at a time. We tried keeping him company and distracting him during those long days in bed. Myrissa also came in for halo traction. She and Daniel became friends and spent a great deal of time in the school room together. A girl named Riley came in during our stay. She had bone cancer. We got to know her and her family pretty well during our time in the hospital together. Riley is now in heaven.

The nurses were special to us. We soon became familiar with the work shifts of all the different nurses and when to expect them. They were great company, and were so friendly and kind. Elijah had a few nurses wrapped around his finger, and they would give him pop and other treats any time he wanted. As a result, we all had to work on bringing Elijah's weight back down after our hospital stay was over! :) Brooke was in her last year of high school at the time and had already decided she would major in nursing. Many of the nurses encouraged her and gave her great advice pertaining to college and a career in nursing. And of course, all the nurses became intimately familiar with Daniel's needs and preferences, and were always there to make him comfortable, keep him entertained and happy. We love them all.

One of the really big highlights for Daniel and for our whole family, was when Daniel's youth pastor brought all the kids up for youth group meetings in the hospital lobby. This happened twice. Daniel was able to see all his friends again and participate in the youth group meetings he loved and missed so much. At the end, the kids would gather around Daniel and have an extended time of prayer for him. These visits broke up the monotony of being cloistered in the hospital. Many other people came by to see us. We had visitors several times a week, and many brought us meals. It was so nice to get a break from cafeteria food!

One day, close to the end of Daniel's stay, the doctors had finally been able to rig up a traction wheelchair so Daniel could leave the hospital for several hours! We got on a bus and explored
downtown Portland as a family. I can't imagine how good it felt for Daniel to get out of that hospital. It was Valentines Day. We ordered some fancy desserts at one of our favorite restaurants, Jakes Grill. We got ready to pay our bill, and the waiter said that one of the tables next to us had picked up the tab - because they were so blessed to see Daniel, in his situation, looking so happy and having such a good time, and they wanted to bless us in return.

About a week after Valentines Day, a surgery was scheduled for Daniel. The halo traction had been remarkably successful at correcting Daniel's spinal deformity to a great degree, but the next step in the whole process would certainly be the hardest.

Friday, February 10, 2012

The next major event in Daniel's story took place in January 2010. Prior to this time, we had been noticing a progression of scoliosis caused by all the spine/spinal cord surgeries. Daniel's scoliosis started out fairly mild but eventually became very severe, and would only continue to worsen until his internal organs were compromised. Daniel's doctors at Doernbecher referred us to a surgeon at Shriners Hospital. After several appointments, Dr. Krajbech at Shriners mapped out a course for repairing the scoliosis, but it would require at least a 2 month stay in Shriners Hospital as an inpatient. Daniel would not be able to leave the hospital. For 2 months.

So, we started making the mental and physical preparations for this huge transition, by looking for a place to stay. Our niece's in-laws just happened to have an empty condo for sale about a 3-minute drive from Shriners, and they very generously offered to let us use it for the duration of Daniel's hospital stay! Since the condo was empty, we would need to find our own furnishings, dishes, etc. My sweet facebook friend, Erika, took this task upon herself by asking members of her church to help supply what we needed. And they did - we were given several pieces of furniture, dishes, a vaccuum, and many other things we hadn't even thought we would need, to make our stay more comfortable. I am still so thankful for the people who lovingly sacrificed to meet our needs, without even being asked. God is so good.

Once we got moved into the condo, Daniel was admitted into Shriners. This took place on January 4th. A surgery was scheduled on January 5th for a halo-placement. This is a heavy, circular piece of metal that has screws all around it that are screwed into the skull. Yes, it sounds like a torture device and looks like one too. The surgery went well, but when Daniel started waking up and we went in to see him, we were taken aback. It looked so painful. Fortunately, the pain was well managed by medication the first few weeks after surgery, and eventually Daniel's skull got used to the device, and it no longer gave him pain. Once the halo was put in, Daniel had to be constantly hooked up to weights. The weights were attached to a pulley system that pulled on Daniel's halo from high above his head. Halo traction, if successful, will eventually straighten out the spine. At first, about 10 pounds of weight were added to the halo, but eventually more and more weight was added until he had about 35 pounds pulling on the halo attached to his skull. Daniel had to be hooked up to the weights at ALL times, even while sleeping, and while taking a bath! A physical therapist at Shriners had invented a portable halo traction walker with wheels that allowed halo patients to walk around while still hooked up to traction.

The whole traction process was very cumbersome and tedious at first, but we all got used to it. Once Daniel recovered from the initial surgery, we settled into a routine. Wes stayed in McMinnville during the weekdays and traveled up on the weekends. Our other two kids went back and forth between staying in McMinnville, and staying in Portland. And I stayed with Daniel 24/7, right in his hospital room :). Shriners is connected by a labryinth of passageways to OHSU and Doernbecher Hospitals. Once we were taught how to get from place to place (it was kind of like a maze), Daniel and I did a lot of exploring. Everyday, we walked to the other hospitals, with Daniel hooked up to his traction "walker". He eventually got used to the walker with wheels, and became somewhat of a daredevil. The nurses were constantly telling him to slow down! One time he was strolling too fast and tipped over, his heavily weighted haloed head smacking the ground. That was scary for both of us - and it only happened once for him to learn his lesson!

Many children at Shriners are required to stay for extended periods of time, so there are school teachers who work at Shriners full-time to help the children keep up with their studies during their stays. The school room has computers, lots of books and LOTS of games. Because I have home schooled Daniel all his life, I brought all his school books from home and continued to teach him myself. We didn't venture into the school room much at first. But the teachers there came down to our room over the first several weeks and we started to get to know them. Eric and Glenda are their names. They eventually convinced us to spend more time in the school room, playing games and reading books. By the end of our stay, Eric and Glenda were helping with Daniel's school (and Elijah's too), and Daniel was spending much of the weekdays down in the school room with them. I can't even begin to tell you what a blessing Eric and Glenda were to us. They both know Jesus intimately (which was a HUGE blessing to us), and they were very bright lights in what could have been a dark situation for us. They made our stay there so much lighter and even pleasant! They taught us to play many fun games, they made us laugh and were in-house friends, constantly there for us. To this day, I love them both so dearly. Eric, who was 31 at the time, in particular, developed a special bond with Daniel. They became fast friends and bosom buddies, and we have had Eric over to our house several times since we left the hospital. My boys pretty much want to be just like Eric when they grow up :).

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About Me

This blog has one purpose - to tell the story of God's grace in the life of my family. I titled this blog Pieces of Grace, because each post will contain a piece of a story, and like a puzzle, the pieces eventually will come together to display a beautiful picture of God's amazing grace.